Jesse and his love of the great outdoors
Enjoys participating in outdoor activities.
Jesse’s story
Prior to my anti-AChR antibody-positive generalized Myasthenia Gravis (gMG) diagnosis in May of 2014, I was active and strong, with the occasional cuts and bruises that come from being an active person. My favorite activities had always been camping, hunting, fishing, playing sports, playing with the dog—anything outdoors—and I was about to start down the path of pursuing my lifelong dream of becoming a firefighter.
Hitting the limit
One day, while working in the yard, I started experiencing severe double vision. I thought I had worked too long in the heat or maybe my contacts were irritated. I never imagined it was due to an illness. A few weeks passed and my symptoms started to get worse. My ophthalmologist thought I should see a neurologist, but I thought, “Nah, I am OK,” and didn’t make an appointment. My symptoms went from bad to worse and one time, while driving to take my firefighter physical assessment exam, the road seemed to suddenly split in 2. The double vision and drooping eyelid became so severe that I drove the rest of the way alternating eyes. I was able to pass the test, but it was no easy task.
Seeking support
It hasn’t been an easy road. This disease presents so many challenges and brings out your deepest fears. Which treatment is going to work? Will I be able to live a regular life? Am I going to fight this alone? But I learned I don’t need to fight alone. For me, finding the Myasthenia Gravis Foundation of America (MGFA) local support chapter was a turning point. Before discovering it, I thought I was the only person on earth who had this disease. It was amazing to learn I was not alone.
Still, allowing myself to accept help is perhaps my greatest lesson. When I arrived home from the hospital, I would tell people, “Oh, I’m OK,” or, “You don’t have to do this or that.” Some good that did—3 times I ended up at the bottom of a flight of stairs. I learned the hard way but am forever grateful for having a supportive family and wonderful friends who look after not only me but also my primary caretaker, my wife, Shannon.
Discovering SOLIRIS
I first heard about SOLIRIS in 2017. At the time, it was still being studied in clinical trials, but I started doing research so that I could talk to my doctor about it. I never needed to ask him because he brought it up to me. He said that my gMG was anti-AChR antibody positive and SOLIRIS was an option, but that I would first need meningococcal vaccinations at least 2 weeks before my first dose of SOLIRIS.
My doctor explained to me that SOLIRIS increases my chance of getting serious and life-threatening meningococcal infections. Meningococcal infections have occurred with patients taking SOLIRIS and may quickly become life-threatening and cause death if not recognized and treated early. My doctor explained that meningococcal vaccines reduce the risk of meningococcal infection but do not prevent all meningococcal infections. I was advised to call my doctor or get emergency medical care right away if I get any signs and symptoms of a meningococcal infection like headache with nausea or vomiting, headache and fever, headache with a stiff neck or stiff back, fever, fever and a rash, confusion, muscle aches with flu-like symptoms, or if my eyes are sensitive to light.
The most common side effects in people with gMG treated with SOLIRIS include muscle and joint (musculoskeletal) pain. Please see additional Important Safety Information for SOLIRIS, including Boxed WARNING regarding serious and life-threatening meningococcal infections, below.
Two weeks after my meningococcal vaccine, in April 2018, I had my first SOLIRIS infusion. Over time, it has allowed me to be more engaged with my family and friends. I realized that gMG does not need to define who you are. While I am not able to be an active firefighter today, I am still grateful. I am able to enjoy some outdoor activities, and if I need to say “No,” I’ve learned that it’s OK to be stoppable. It feels good to once again say “YES!” to some things that I like to do.
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Get the latest news and information about anti-AChR antibody-positive gMG and SOLIRIS to help you learn more about your treatment.
Sign up todayWhat is the most important information I should know about SOLIRIS?
SOLIRIS is a medicine that affects your immune system and can lower the ability of your immune system to fight infections.
- SOLIRIS increases your chance of getting serious and life-threatening meningococcal infections that may quickly become life-threatening and cause death if not recognized and treated early.
- You must receive meningococcal vaccines at least 2 weeks before your first dose of SOLIRIS if you are not vaccinated.
- If your doctor decided that urgent treatment with SOLIRIS is needed, you should receive meningococcal vaccination as soon as possible.
- If you have not been vaccinated and SOLIRIS therapy must be initiated immediately, you should also receive two weeks of antibiotics with your vaccinations.
- If you had a meningococcal vaccine in the past, you might need additional vaccination. Your doctor will decide if you need additional vaccination.
- Meningococcal vaccines reduce but do not prevent all meningococcal infections. Call your doctor or get emergency medical care right away if you get any of these signs and symptoms of a meningococcal infection: headache with nausea or vomiting, headache and fever, headache with a stiff neck or stiff back, fever, fever and a rash, confusion, muscle aches with flu-like symptoms, and eyes sensitive to light.
Your doctor will give you a Patient Safety Card about the risk of meningococcal infection. Carry it with you at all times during treatment and for 3 months after your last SOLIRIS dose. It is important to show this card to any doctor or nurse to help them diagnose and treat you quickly.
SOLIRIS is only available through a program called the SOLIRIS REMS. Before you can receive SOLIRIS, your doctor must enroll in the SOLIRIS REMS program; counsel you about the risk of meningococcal infection; give you information and a Patient Safety Card about the symptoms and your risk of meningococcal infection (as discussed above); and make sure that you are vaccinated with the meningococcal vaccine and, if needed, get revaccinated with the meningococcal vaccine. Ask your doctor if you are not sure if you need to be revaccinated.
SOLIRIS may also increase the risk of other types of serious infections. Certain people may be at risk of serious infections with gonorrhea. Certain fungal infections (Aspergillus) may occur if you take SOLIRIS and have a weak immune system or a low white blood cell count.
Who should not receive SOLIRIS?
Do not receive SOLIRIS if you have a meningococcal infection or have not been vaccinated against meningitis infection unless your doctor decides that urgent treatment with SOLIRIS is needed.
Before you receive SOLIRIS, tell your doctor about all of your medical conditions, including if you: have an infection or fever, are pregnant or plan to become pregnant, and are breastfeeding or plan to breastfeed. It is not known if SOLIRIS will harm your unborn baby or if it passes into your breast milk.
Tell your doctor about all the vaccines you receive and medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements which could affect your treatment. It is important that you have all recommended vaccinations before you start SOLIRIS, receive 2 weeks of antibiotics if you immediately start SOLIRIS, and stay up-to-date with all recommended vaccinations during treatment with SOLIRIS.
What are the possible side effects of SOLIRIS?
SOLIRIS can cause serious side effects including serious infusion-related reactions. Tell your doctor or nurse right away if you get any of these symptoms during your SOLIRIS infusion: chest pain, trouble breathing or shortness of breath, swelling of your face, tongue, or throat, and feel faint or pass out. If you have an infusion-related reaction to SOLIRIS, your doctor may need to infuse SOLIRIS more slowly, or stop SOLIRIS.
The most common side effects in people with gMG treated with SOLIRIS include: muscle and joint (musculoskeletal) pain.
Tell your doctor about any side effect that bothers you or that does not go away. These are not all the possible side effects of SOLIRIS. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit MedWatch, or call 1-800-FDA-1088.
INDICATION
What is SOLIRIS?
SOLIRIS is a prescription medicine used to treat adults with a disease called generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AChR) antibody positive. It is not known if SOLIRIS is safe and effective in children with gMG.
Please see the full Prescribing Information and Medication Guide for SOLIRIS, including Boxed WARNING regarding serious and life-threatening meningococcal infections.
What is the most important information I should know about SOLIRIS?
SOLIRIS is a medicine that affects your immune system and can lower the ability of your immune system to fight infections.
- SOLIRIS increases your chance of getting serious and life-threatening meningococcal infections that may quickly become life-threatening and cause death if not recognized and treated early.
- You must receive meningococcal vaccines at least 2 weeks before your first dose of SOLIRIS if you are not vaccinated.
- If your doctor decided that urgent treatment with SOLIRIS is needed, you should receive meningococcal vaccination as soon as possible.
- If you have not been vaccinated and SOLIRIS therapy must be initiated immediately, you should also receive two weeks of antibiotics with your vaccinations.
- If you had a meningococcal vaccine in the past, you might need additional vaccination. Your doctor will decide if you need additional vaccination.
- Meningococcal vaccines reduce but do not prevent all meningococcal infections. Call your doctor or get emergency medical care right away if you get any of these signs and symptoms of a meningococcal infection: headache with nausea or vomiting, headache and fever, headache with a stiff neck or stiff back, fever, fever and a rash, confusion, muscle aches with flu-like symptoms, and eyes sensitive to light.
Your doctor will give you a Patient Safety Card about the risk of meningococcal infection. Carry it with you at all times during treatment and for 3 months after your last SOLIRIS dose. It is important to show this card to any doctor or nurse to help them diagnose and treat you quickly.
SOLIRIS is only available through a program called the SOLIRIS REMS. Before you can receive SOLIRIS, your doctor must enroll in the SOLIRIS REMS program; counsel you about the risk of meningococcal infection; give you information and a Patient Safety Card about the symptoms and your risk of meningococcal infection (as discussed above); and make sure that you are vaccinated with the meningococcal vaccine and, if needed, get revaccinated with the meningococcal vaccine. Ask your doctor if you are not sure if you need to be revaccinated.
SOLIRIS may also increase the risk of other types of serious infections. Certain people may be at risk of serious infections with gonorrhea. Certain fungal infections (Aspergillus) may occur if you take SOLIRIS and have a weak immune system or a low white blood cell count.
Who should not receive SOLIRIS?
Do not receive SOLIRIS if you have a meningococcal infection or have not been vaccinated against meningitis infection unless your doctor decides that urgent treatment with SOLIRIS is needed.
Before you receive SOLIRIS, tell your doctor about all of your medical conditions, including if you: have an infection or fever, are pregnant or plan to become pregnant, and are breastfeeding or plan to breastfeed. It is not known if SOLIRIS will harm your unborn baby or if it passes into your breast milk.
Tell your doctor about all the vaccines you receive and medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements which could affect your treatment. It is important that you have all recommended vaccinations before you start SOLIRIS, receive 2 weeks of antibiotics if you immediately start SOLIRIS, and stay up-to-date with all recommended vaccinations during treatment with SOLIRIS.
What are the possible side effects of SOLIRIS?
SOLIRIS can cause serious side effects including serious infusion-related reactions. Tell your doctor or nurse right away if you get any of these symptoms during your SOLIRIS infusion: chest pain, trouble breathing or shortness of breath, swelling of your face, tongue, or throat, and feel faint or pass out. If you have an infusion-related reaction to SOLIRIS, your doctor may need to infuse SOLIRIS more slowly, or stop SOLIRIS.
The most common side effects in people with gMG treated with SOLIRIS include: muscle and joint (musculoskeletal) pain.
Tell your doctor about any side effect that bothers you or that does not go away. These are not all the possible side effects of SOLIRIS. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit MedWatch, or call 1-800-FDA-1088.
INDICATION
What is SOLIRIS?
SOLIRIS is a prescription medicine used to treat adults with a disease called generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (AChR) antibody positive. It is not known if SOLIRIS is safe and effective in children with gMG.
Please see the full Prescribing Information and Medication Guide for SOLIRIS, including Boxed WARNING regarding serious and life-threatening meningococcal infections.